Chiari malformation surgery 2 weeks ago

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hello,

I had decompression surgery 2 weeks ago for Chiari malformation type 1.

The first week was fine, some nausea and discomfort but mostly bearable.

The second week however I am experiencing excruciating headaches every day. Every time I cough, sneeze etc I get this surge of pain that hits me and leaves me pretty much in bed all day. 

Why is this happening even though I’ve had the surgery? I didn’t think I would feel this much pain after the surgery. It feels almost like I have MORE pain than I did before. I’m finding it really hard to stay positive as I’m in constant pain. 

I have taken paracetamol but it’s not working. I have tried ibruprofen which isn’t working either. My only other pain killer is codeine which I’ve been trying to avoid but I’m desperate for the pain to go away.

I understand that taking paracetamol over a long period of time can actually induce headaches too? Has anyone had this?

I’m just curious to see if anyone else has had the surgery and continued to get headaches? Is this normal? Will they go? How long will it take? 

Any info/advice is greatly appreciated.

Thanks in advance.

0 likes, 14 replies

Report

14 Replies

  • Posted

    Hi Kelly, be kind to yourself and patience is needed with recovery. I had the surgery on November 30th and had the same thing for about 2-3 weeks with the cough/headpain. My advice is don’t be a hero and take the stronger pain killers  if you need it, that’s what they’re for! 😊 And if you’re in pain and distressed and not sleeping you’re hindering recovery. If the pain is that bad speak to your surgeon and ask for something stronger. For the few weeks you’re taking pain killers as per instruction & as long as you’re healthy otherwise there shouldn’t be any long term effects, but again discuss this with your surgeon.  

    Everyone’s headaches and recovery vary so be mindful. The best thing I ever read in one of these forums is that people who have had successful surgeries aren’t sitting online searching for answers, they’re out living their life. So quiet often people only report all the negative/bad things that occurred on these websites . 

    If it makes you feel better my recovery was as follows: I had headaches and was fairly tired for about 4-5 weeks. I couldn’t cough/ her up to quickly for about 2-3 weeks. I’m back at work full time now at the 6 weeks mark and today did my first gym session. Rest and looking after yourself is so important while your body heals. 

    Wishing you a quick recovery and I hope the headaches begin to subside, I can totally sympathise with you. Xx

    Report
    • Posted

      Thank you so much for your kind words, you have no idea how much that helped reading that. I’ve felt really negative since surgery and down about it all thinking that nothing has changed. I just want my life back and feel like I’ve lost a huge chunk of it at 28! You’re right though - I need to rest and take the pain killers. I usually have a high pain threshold but this has really taken its toll on me. Im praying and hoping that this passes and I will feel normal again soon. 

      I’m pleased to hear you’ve managed to get back to work and the gym!  Thats amazing and that’s what my aim is eventually. Fingers crossed... it’s nice to know someone else has shared a similar experience. Thank you. Xxx

      Report
  • Posted

    First off the old saying "everyone is different". This is a good download - https://www.thewaltoncentre.nhs.uk/uploadedfiles/leaflets/Chiari%20Malformation.pdf. ;                                              It states that some symptoms remain and sometime get worse after decompression

    Report
    • Posted

      Thanks. I do hope symptoms haven’t remained or have gotten worse... that would be so depressing. 
      Report
  • Posted

    Thank you so much for your kind words, you have no idea how much that helped reading that. I’ve felt really negative since surgery and down about it all thinking that nothing has changed. I just want my life back and feel like I’ve lost a huge chunk of it at 28! You’re right though - I need to rest and take the pain killers. I usually have a high pain threshold but this has really taken its toll on me. Im praying and hoping that this passes and I will feel normal again soon. 

    I’m pleased to hear you’ve managed to get back to work and the gym!  Thats amazing and that’s what my aim is eventually. Fingers crossed... it’s nice to know someone else has shared a similar experience. Thank you. 

    Report
  • Posted

    Hi everyone,

    I have had surgery on september 4, I have a chiari Malformation.

    I would like to share this experience with you

    Report
  • Posted

    Hi Luna,

    DO not worry about it, my recovery after surgery was 6 weeks ..but the first month was hell, but I am now pain, symptom and drug free - enjoying the quality of life..listen to your body, take as much rest as possible, drink plenty of fluid..take as much as pain killer if you can..keep moving gently..but if by 4 weeks the pain still excruciate then make sure you have the surgeon check on you..sometime it happen when they suffer from chemical meningitis..but you have done the right thing..just be patient 

    Report
    • Posted

      Hey,

      Thanks for your reply. I’m so sorry you had a month of hell! It’s horrible isn’t it? The pain is just unbearable sometimes. It gives me hope to know you are feeling better now and enjoying life. I’ve taken on doctors orders and I’m now taking more pain meds and making myself rest! Question - how long did you wait to wash your hair?  I’m keen to have a relaxing bath/wash hair at the same time. I had my staples removed a week ago so assuming all is fine to wash as normal! 

      Thanks again!

      Report
    • Posted

      LOL...what are you like ..the least you should think is washing hair..you should be able to wash hair after 2 weeks...it is horrible recovery..but believe me..you will be laughing in a month time..patient is virtue, if you feel better..please do yourself a favour STOP cleaning the house..be  MARTYR for your family (ha..ha..) stay at home ..do not go back to work at least 2 - 3 months..believe me..people who could not wait then going back to work..are the one who ending up having 2nd or 3rd surgery..you dont want that..GOD LUCK..keep in touch..let me know how are you doing
      Report
    • Posted

      Hi! Thought you might like to know I am doing better this week, less headaches and generally able to move about easier. Appetite still hasn’t really returned but that doesn’t bother me too much. I am however noticing my tinnitus is more noticeable now but I suppose things could be worse! Also I managed to wash my hair!! Haha so feeling a lot more human because of that now. How are you getting on? Hope everything is well on your hand!! smile
      Report
  • Posted

    Hi Luna,

    how I am pleased to hear your news..that is it girl..be kind to yourself..ha..ha..clean hair..make lots of different..please be patience, take time..when will you go back for post operation check up ?...are you in the UK or else where..make sure..write it down EVERYTHING of how you feel and if you have diary..just write it down..now you can move about..please be gently..it is not worth it...to be super girl...if in the end you get bad again.  I am so grateful of how I feel now...I keep giving them (health care professionals) feed back each 6 months just to let them know - how I am as I am so blessed to have them..looked after me.

    Now and then I have got tingling back and arm but nothing..to compare with prior decompression, plus I am free drug..so ..I can't ask anything else..a part of being glad and appreciate of my quality of life now..as before I was taking that for granted... at the end of the day..once you are not well....company would not care..you are only a number..so :1. Be glad is over for you  2. Appreciate each day  3. Look After yourself now.

    DONT FORGET TO let your neurosurgeon everything you feel from now on till you see him again.

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up